ME Caregiver Support Call

Discussion in 'Caregiver support' started by Denise, Mar 7, 2019.

  1. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    ME Caregiver Support Call Announcement

    Sorry we didn’t get a call in February. Caregiving responsibilities (including self-care) took precedence.

    Please join us for our next call on Saturday 16 March at 4pm EST.

    What are the top 2 or 3 things you would suggest to a caregiver?

    (Reminder - we usually have time to discuss additional issues.)

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us to connect with, share with and support other caregivers.




    We look forward to talking with you soon!

    Jane, Denise and Bobbi

    Call info and registration:

    https://my.meaction.net/events/me-caregiver-support-call-march

    Phone Dial-in
    +1.408.740.7256 (US (San Jose))
    +1.888.240.2560 (US Toll Free)
    +1.408.317.9253 (US (Primary, San Jose))
    (Global Numbers)

    Meeting ID: 251 074 908
    Room System
    199.48.152.152 or bjn.vc
    Meeting ID: 251 074 908




    MEDICAL DISCLAIMER:

    #MEAction Caregiver Support group is exclusively intended for support and information and should not be used as medical advice. We (the administrators) are NOT medical professionals; we are caregivers sharing our own experiences. What you do with the information* offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the (US)FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. (In the US) Please call 911 in an emergency.

    *Due to multiple languages used internationally, terms such as information and advise are used interchangeably.

    Confidentiality disclaimer

    Calls are open to all who register for them. We ask that call participants respect the confidentiality of all information shared on calls (and remind participants that confidentiality cannot be guaranteed.)



    ETA - thread title modified
     
    Last edited: Mar 9, 2019
  2. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    Skycloud and rvallee like this.
  3. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    ME Caregiver Support Call (April)

    Please join us for our next call on Saturday 20 April at 4pm EST.

    During our next call we will discuss food issues - work-arounds and best practices . Let’s also share recipes. Email them to caregiver@meaction.net and we will email them before the call.

    We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us to connect with, share with and support other caregivers.

    Additional call information:

    https://my.meaction.net/events/me-caregiver-support-call-april
     
    Trish and Dolphin like this.
  4. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    Reminder ME Caregivers Support Group - June 22nd

    Our next call is this Saturday, 22 June 2019 at 4:00 PM EDT


    https://bluejeans.com/308337288

    Want to dial in from a phone?

    Dial one of the following numbers:
    +1.408.740.7256 (US (San Jose))
    +1.408.317.9253 (US (Primary, San Jose))
    (see all numbers - https://www.bluejeans.com/premium-numbers)

    Enter the meeting ID 308 337 288 followed by #

    Call registration link: https://my.meaction.net/events/caregivers-support-group-june-22nd


    Our calls are geared towards the unique needs of ME caregivers.


    (Information on support calls for US patients can be found at - https://www.facebook.com/groups/293261061038536/)


     
    rvallee likes this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Can you post the link if one of those infographics for this meeting gets created so I can share it on Twitter and Facebook.
     
  6. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    @Tom Kindlon - I am not sure what you mean by infographic for the meeting.... (And I always appreciate your reposting, sharing news/events, etc. :) )
     
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    Something like this:
     
  8. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    @Tom Kindlon Thanks.
    Staff at MEAction would be the ones who generate an infographic and my understanding is they are kind of swamped at the moment.
    Hopefully infographics can be produced for future calls.
     
  9. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    Our next ME Caregiver Support Call will be on

    Saturday 20 July 2019 3pm ET.

    Call details and registration info:



    https://my.meaction.net/events/me-caregiver-support-call-july-1



    TO JOIN THE CALL:

    https://bluejeans.com/322127464?src=join_info

    Meeting ID
    322 127 464

    Want to dial in from a phone?

    Dial one of the following numbers:
    +1.408.740.7256 (US (San Jose))
    +1.408.317.9253 (US (Primary, San Jose))
    (see all numbers - https://www.bluejeans.com/numbers)

    Enter the meeting ID and passcode (322 127 464) followed by #



    Question from Denise - How and when do you ask others for help?

    (Reminder – you can email us at caregiver@meaction.net)



    We look forward to talking with you soon!

    Jane and Denise

    (Sorry about the lack of infographic (again))
     
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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,254
    I've shared it on Twitter and Facebook:
    https://twitter.com/user/status/1149305305655914497

     
  11. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    Tom Kindlon likes this.
  12. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    501
    August ME Caregiver Support Call

    SATURDAY

    AUGUST 24, 2019 @ 03:00 PM - 05:00 PM EDT

    We invite caregivers of every sort (parent, friend, partner, sibling, child, etc) to join us to discuss some of the issues specific to caring for loved ones with ME.




    Our next ME Caregiver Support Call will be on

    Saturday 24 August 2019 at 3pm (ET).
    (topic still TBD)




    Meeting URL
    https://bluejeans.com/934868983?src=join_info

    Meeting ID
    934 868 983

    ______________________________________________________________________________

    Want to dial in from a phone?

    Dial one of the following numbers:
    +1.408.740.7256 (US (San Jose))
    +1.408.317.9253 (US (Primary, San Jose))
    (see all numbers - https://www.bluejeans.com/numbers)

    Enter the meeting ID and passcode followed by #
     
    Dolphin likes this.
  13. canyonkid

    canyonkid New Member

    Messages:
    3
    Any caregiver calls since 2019? Or other similar networks (ideally European time zone for me)?
     
    Milo likes this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,791
    ahimsa, MEMarge and Trish like this.

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